Emi Koyama just posted a really great article on the Bioethics Forum site reviewing a research practice of intersex fetus treatment using a synthetic hormone and the Ashley case. She says, “I am starting to question seriously what role bioethics and bioethicists play in medical controversies involving children who cannot make decisions for themselves, and parents, especially mothers, who are forced to make the decision under complicated social, cultural and economic circumstances” and “After all, what is the relevance of risk/benefit analysis when the intended goal is unethical?”

Emi writes toward the end of her wonderful article, “I trust many of these scholars and their judgment. But that was how I felt about the disability theorists who were part of the working group that ended up helping to polish up growth attenuation as a legitimate treatment.”

That reminds me. I have a small piece of advice for anyone who has a chance to read Dr. Adrienne Asch’s commentary to the Diekema & Fost AJOB article. Please don’t miss the footnote on Page 46. Dr. Asch is a member of the Seattle Growth Attenuation and Ethics Working Group and signed the group’s statement that claimed growth attenuation to be ethically admissible for severely disabled children in general without court orders, something Dr. Wilfond called “a compromise” the group had reached. But Dr. Asch explains in the footnote that she signed it because she “supported the process through which the statement was produced” and not because she supported all its conclusion. But normally, signing a document means that you support its contents including the conclusion, whatever process there was in its production. And whatever excuse you might have. This footnote leaves me really curious about what happened in the working group discussions.

I just read “It’s Not the Growth Attenuation. It’s the Sterilization!” , Dr. Lantos’ commentary to the AJOB article “Ashley Revisited” by Dr. Diekema and Dr. Fost. Dr. Lantos virtually pointed out the fact that the doctors’ justification has been full of deceptions. It’s the fact that I have been documenting in my blog and I’m so glad that someone officially wrote in an academic journal about “the bizarre opaqueness” of their supposedly scientific articles. Here, I just want to point out two pieces of misinformation I found in his commentary. I think at least one of them leads us to a serious question surrounding the 2007 agreement between the hospital and WPAS. Continue reading →

Dr. Diekema is among the plenary speakers in the following pediatric ethics conference in Cleveland. He is going to speak about the Ashley case in one of the breakout sessions on April 22. “Ethics Concults and Institutional Interests: The Ashley Case.” He will also speak in another breakout session on the next day about withholding and withdrawing fluids and nutrition.

February 10, 2010 – (Edmonton) On Feb. 4, the federal government announced nearly a $1 million each over six years for two University of Alberta-led projects aimed at bringing communities and universities together to build knowledge on areas affecting Canadians.

Robert Wilson, professor in the Department of Philosophy, was awarded $1 million in a community-university research alliances grant by the Social Sciences and Humanities Research Council of Canada to fund his project titled “Living Archives on Eugenics in Western Canada.” Read the rest here

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FOR MORE INFORMATION visit the LIving Archives on Eugenics Website.
This blog is the combined effort of a team of researchers and community members working around the world in different disciplines to address concerns around human variation, normalcy, eugenics, and enhancement.